My COBRA insurance coverage ends on February 29 - as in Wednesday. I have been praying, my family has been praying, my friends have been praying, and quite possibly soon my sponsor children will be praying. I was notified today that my Hearing for Social Security is scheduled for May 21. While that beats 9-18 months, it sure is not the outcome I was praying for. I had so hoped and believed the judge would just look over the mountain of papers and make a (positive) decision. What is a hearing going to do? It is teleconferenced so the judge will not even see me in person so "the big show" will be shoulders and chest in a wheelchair. I can do a 360 for full effect if that makes him happy. I guess by May I have to shave my legs so I can wear a skirt because I don't think Federal judges are down with blue jeans. My other hope of Medicaid is still closed due to lack of funding. This is Michigan. We probably will not have funding again for a few decades. Stupid auto industry, who needs a car anyway? Actually, that is the problem. So now I am stepping out in complete blind faith that God will provide for my every single need as He promises in the Bible. It may not be how I expected (oh it most certainly is not how I expected) and it will be in His perfect time (which seems to not be synchronized to my watch) but He will provide for me. I wish I could say how, but I have no clue. I wish I could say when, but my calendar is full of empty boxes. All I know is that it will happen and I choose to have faith in the one who created me and has promised to never fail me. I wonder if wheeling over to Canada to buy my prescriptions is a part of His plan? ;)

Wild Olive

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Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back